Life with a Chronically Ill Child (Guest Post)
March 1, 2010 by
Filed under Family, Featured Stories, Health
Susan and Nick
Children don’t always come into the world perfect. My youngest of four children certainly didn’t. Nick was born with a horribly malformed heart. After a heart surgery at five days old, another at three months, another at one year old, he received a heart transplant just before turning two. Today, he is twenty one and attending college. Living with Nick’s chronic illness hasn’t always been easy. Though the years I’ve learned ways of cope during tough times.
Make the most of every day
Worry doesn’t add a minute to life. In fact, it takes minutes away that could be used to make precious memories. Don’t miss out on those memories by being stymied by worry. Live for today, not for what might happen down the road. Vacations are an excellent way to build shared memories.
Be united as a family
First and foremost be a family. Parents need to support each other, especially in front of the children. They feed off their parent’s actions and attitudes. Make sure each child knows they are important to making the family complete. Siblings should be shown they are just as important as the sick child. Share meals together as much as possible. That time builds family bonds.
Life shouldn’t revolve around the ill child
An ill child should be taught to mind, have chores, and be a functioning member of the family as much as they can be. It is important that siblings don’t become resentful. Standards of behavior should be the same for everyone. The whole family should support a child when they are participating in a sporting event, a program, band concert, etc. Attend the event in force whenever possible.
Understand that everyone handles stress differently
Recognize that not everyone in the family will react to a negative situation the same way. I talk a lot and fast when I’m scared. My husband paces and goes into his own world when he is worried. We have to respect each other’s method of coping.
Look for ways to have control
Volunteer, have a hobby, exercise. Do something positive for yourself every day. It takes a good sound body and mind to deal with an ill child. It is important for the caregiver to take care of his or her self.
A chronically ill child in the family adds special challenges to life, but they also add love and laugher. Nick has certainly brought that to our family.
By Susan May
Nick’s New Heart
Susan, you are a superwoman! I loved this story and I’m thrilled with the happy ending. Keep writing girl!
Tami
HI SUSAN, MY NAME IS NIKKI AND I HAVE A SON, WHO IS NOW 10..WILL BE
CELEBRATION OF 6 YEARS??? CAN YOU GIVE MY SOME TIPS ON HOW YOU HELP
YOU SON CONTINUE DO SO WELL AFTER THESE YEARS???
Nikki,
Do what the doctors tell you down to the letter. That said remember you can get a second opinion when you’re not comfortable with what you are being told. Keep in mind that you want to live a happy life also, so let a kid be a kid. You are a parent in your child’s care, speak up when you don’t like or think something is working. Most of all love your child and appreciate every moment, and don’t forget to pray.